The Reality of After

I had planned to write more in-depth about my chemotherapy experiences, however, I wanted to explore more about the reality of after first.?I mentioned in my last article nobody talks about what comes next (insert Hamilton song here), and I think that it has been the day to day after that has been the hardest for me.

After my initial low anterior resection with an ileostomy to allow the surgical sight to heal. I am sure my brilliant surgeon Dr. Laurence Sands would like me to mention he hand-sewed the coloanal anastomosis, I am told that very few people in the world could have completed the work he did given how low my tumor was and it is a small miracle I do not have a permanent colostomy bag. Due to my body shape and a short vein, my stoma was inverted.?Fun fact, this makes it EXTREMELY hard to get and keep a good seal for the ileostomy appliance and bag to stay on and work.??

I could write forever about the struggle to figure it out, but in the interest of avoiding this being a TLDR, lets skip to going back to work.?I don’t know if you have ever had to stand in front of a large group of high school students and pray your ileostomy wouldn’t leak feces all over you in front of them……but I do not recommend it.?

I learned a lot during this time.?Mostly that people aren’t necessarily interested in your struggles unless you are smiling through them.?I learned quickly to smile and tell them I was never better and they happily would chat about how much of a survivor I was and how wonderful it was to see me.?Very few people ever asked how they could help me.

Eventually, I was able to make it to my reversal date…..after many, MANY, highly invasive tests that I swear my doctor just made half up.?Due to some anomalies, I went into surgery not 100% sure if I was going to wake up with a reversal or not and was overwhelmed with relief when it was succesful.

I thought that would solve all my problems.?That it was the end.?I was so wrong.?The reality of after continued, with having to experiment with slowly learning what I could and couldn’t eat.?How sensitive my stomach was – what adult diapers and pelvic floor therapy was – again, do NOT look that up.

About a year and a half later I am come to some normalcy.?There are days I feel just like myself and I forget any of this ever happened.?But the reality of after is that it did, and things are different now.?Day to day I end up with this weird swelling and stiffness in all my joints.?I cannot walk two blocks or go up a flight of stairs without my entire body rebelling against me…….although I was able to climb a waterfall in Puerto Rico….I swear the mountain rainforest was healing.?

The reality of after is that your world will never be the same.? I have become acutely aware of how truly not handicap accessible my complex is – 4 buildings with only 2 elevators = lots of extra walking and is one big bad cycle.?Trying to get work accommodations is impossible.?I was told at one point when I was crying hysterically after trying to advocate for myself that it was better when I had cancer because nobody knew since I never said anything. Just because my disability isn’t out in the open doesn’t mean I don’t have one.

The reality of after for many people with hidden disabilities is that the world works really hard to make you feel less than.?It pissed me off.?I cried.?Then I pulled my big girl panties on and decided I would not let the world make me forget who the fuck I am.?So now, I waddle along as fast as I can, dealing with the pain and stiffness, and I unashamedly tell people when I am not okay….even if that makes them uncomfortable.?I do it not only for me, but for those that are gone or otherwise cannot.?Advocating for others, improving the lives of others, and building community are core values.?These are things that I had in my before reality, and I am bringing through in the reality of after.

#cancer #hiddendisabilities #disabilityawareness #resilience #corevalues